Just returned to the forum after a long time away. This thread has struck a chord with me. I am now 5 years into caring for my husband (50) who suffered a massive stroke with now long term physical disabilities and severely limited speech. I’m 46 and get 3 hours twice a week to go out by myself but this is not enough now even though at first it seemed a luxury. My husband refuses any additional help, no extra sitting service, no respite care. I managed a night away with a friend in May to watch a theatre show but on returning home his sister who was looking after him had evidently not coped well.
Although I’m not on antidepressants anymore I feel trapped and resentful and either angry, sad or just numb. In the beginning of caring this was not something I felt but now I suppose his recovery is nonexistent and I realise this is going to be it for us for years/decades to come.
I also think that if I did get a two week respite holiday (which is the holy grail for me) I would struggle to return to my “caring bubble” having experienced some kind of happiness, joy and freedom.
Sometimes I catch a glimpse of other people’s lives and am gobsmacked at how different there lives are to ours yet seem just ordinary to them. Especially as pre-stroke we had just a normal family life. This realisation can really shake me to my core.
Wishing everyone on here the best xx
Silver_freemark,
Your lives have changed beyond recognition, no wonder you are struggling with the enormity of it all.
Is your husband still cognitively able?
I think it’s time for some difficult conversations about how the stroke has affected both of you. Difficult though it will be someone (you/ a member of your family / family friend /professional) needs to talk with him that if you are in this for the long haul then you need help - help to care for him, help with which ever household jobs you find most effortful, regular breaks and your fortnight off. He needs to know that without this support in place for you - you really can’t carry on caring indefinitely.
Melly1
I agree Melly and thanks for the response. I don’t know who is going to get through to him as we had a social services visit many months ago and unless he gives the go ahead there is very little I can receive in terms of extra help.
He does not recognise that my time is as valuable as his and I believe that it is, (although it took me years to recognise this). I am standing up for myself more and I go out for a walk for an hour on a Saturday and Sunday while he is occupied with some speech therapy tasks and our 17 year old is at home. He resents even this. I do it anyway.
I have asked if he would like to visit a relative and get out and go round to their house for a few hours, but he refuses and he is so stubborn.
I would like to know the experiences of other long term spousal carers just to figure out how to get through this as I don’t want my own health to start to suffer and I already have regular flare ups of sciatica.
Anyway, thank you for reading this xx
I don’t have experience of spousal stroke caring but my Mum did for over 30 years: my Dad had a major stroke at 52, taking the use of his right arm completely, massively damaging his speech, and also causing damage to his right leg, although he was just about able to walk.
One of the big problems with stroke in younger men is that they are no longer “superman.” Adjusting to the new reality is a major struggle and (understandably) this can lead to resentment and to a lack of motivation…and a dollop of selfishness. In among all that is the fear that if you go out and see other people, you might find someone else.
The hard part, especially as his speech is affected, is talking about these things. Bad enough that most men are taught to suppress all this rather than talk about it, but the physical difficulty of discussing this with you probably means you’ve not been able to get his fears and frustrations off his chest.
It might be worth starting there, and pointing out that he can’t afford to have you collapsing on him due to exhaustion.
I would strongly suggest that some counselling would be helpful to learn techniques of managing a partner’s expectations.
Firstly, that without you they would need to move into long term care as they can’t manage without you.
If they dispute this, go away, alone for the day, or better still, for a weekend!
The idea that the man “rules the roost” is an old fashioned view, but of course it often persists.
You CANNOT do all the work that both of you did, you need to seriously cut down the jobs list to survive.
Top of that list has to be sorting out the garden to make it as low maintenance as possible.
After a car accident 3 months after my husband died, I couldn’t walk for 5 years. Either I sold the cottage, or I accepted that I needed to change the garden forever. Fortunately, I’d realised when we bought the cottage in 1976 that if anything happened to my husband the garden was going to be an issue.
We had turned a half acre wilderness into a lovely garden, full of plants bought with love, or given to us for friends. Lots of fruit trees, shrubs, camellias, lilac etc. etc.
Gradually my eldest son and I got rid of the LOT. Absolutely everything. Now a quick whizz round on the mower, job done. I have a large patio now, so I can sit and enjoy being outside. I compensated for the lack of shrubs with lots of pots, but most of them and gone too as my arthritis has got worse.
My son cuts the hedge one side of the garden, the other side is cut by a man with a tractor and hedge cutting attachment. The trees at the front have gone, replaced by a fence.
Of course I feel sad that my pretty garden has gone forever, but it had to be done.
Look at every single you job you do and ask yourself if
A) You could get rid of it altogether by making changes
Someone else could do it
C) Something else could do it, i.e. dishwasher, washing machine, laundry service.
Just because husband refuses a Social Services Assessment doesn’t mean you can’t have a Carers Assessment. SS should understand that the sort of things I’m suggesting could apply equally to both partners, so if husband needs help because he can’t do anything, and expects wife to do it instead, SS can fund that as it’s supporting the carer to care.